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ME/CFS and Beating the Clock
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Article: The "A Time For Action" Campaign Is WORKING!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 12, 2010.

  1. Hope123

    Hope123 Senior Member

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    There is a time scheduled for talking about what came out of Science Day tomorrow at 9:15-10:15 per the agenda. Hopefully, CFSAC members will pick up on how XMRV data was presented prejudicially yesterday. I think many CFSAC members are aware of the studies/ results but things need to be voiced and documented on the record.
  2. RivkaRivka

    RivkaRivka Senior Member

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    bob did great in his testimony, and in it he says 1500+ emails have been sent. that does not include faxes and calls. WE ARE GOING STRONG AND DOING GREAT!
  3. RivkaRivka

    RivkaRivka Senior Member

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    i'll ask bob if he can do this. i'm not there! and i'm not sure if bob has access to email now. but i'll send this to him.

  4. Recovery Soon

    Recovery Soon Senior Member

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    Personal Emails are Great IN ADDITION TO THE PRESSURE OF DAILY EMAILS. Pressure...Pressure...Pressure.
  5. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Does anyone have the Mailing addresses for Collins and Fauci?

    Someone mentioned sending personal letters- written letters- they could be annonymous if you don't want to give your name, but sharing your story of ME/CFS.

    Also someone on another post mentioned mailing POST CARDS, as they would be seen quickly. Although not much room for personal stories on Post Cards, but a line or two about "What are you doing for ME/CFS"
  6. JoeNavy

    JoeNavy Leading Petty Officer

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    I agree with anciendaze about personalization -- you can't beat it. I will continue my series of personalized rhesus macaque cartoons. Every one I do is slightly different. (My first tries are linked on the CFS Central blog by Mindy Kitei.) I will send new cartoons to Dr. Mangan, but reserve the option to inflict them more widely.
    Oh, and a message to Stuart LeGrice... this is not a WhatHaveYouDoneForMeLately Campaign. This is a WhatHaveYouDoneForMeEVER Campaign.
  7. ahimsa

    ahimsa Senior Member

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    I've been sending an email almost every day (missed a few days due to flu and other issues). While each email contained the basic message that was suggested, I tried to add some new text each time (a few sentences, a link to an article, something) so that each one would be different. That should make it obvious that these messages are not generated by a computer but by a human being.

    In fact, the last message I sent had the subject line "There's a real live person behind each of these emails." Actually, a more accurate description, especially with flu symptoms on top of ME/CFS, would have been "nearly dead person" rather than "live person." :rolleyes: Now that I'm finally recovering from the flu I'm hoping to send some faxes later today.

    Love the idea of cartoons! I saw the three that were linked by CFS Central and they are simply wonderful!!! (here's the link to that blog entry - http://www.cfscentral.com/2010/10/monkey-business.html ) I'm not nearly that creative.

    And I simply have to repeat, in large bold type, what you said above:

    This is not a WhatHaveYouDoneForMeLately Campaign.
    This is a WhatHaveYouDoneForMeEVER Campaign!
  8. urbantravels

    urbantravels disjecta membra

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    OK, now I totally need to draw some pictures. I feel inspired!
  9. meadowlark

    meadowlark Senior Member

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    Hi Eressea:

    I am in Canada, and I'm sending the e-mails. So far, no one has sent them back saying that I am being ignored because I'm not an American voter. And even if they did, I would send them anyway. Before I became ill, I sent e-mails for Amnesty International, protesting the imprisonment of artists and writers. So I tend to think that most governments are prepared for correspondence from beyond their borders.

    Instead of simply writing "Patients and their families are waiting" I write "Patients and their families are waiting. The international community is watching," or "Patients, in the U.S. and around the world, are waiting." Whatever strikes my fancy on the given day.

    Besides, what's the worst thing that could happen? I guess they could ignore international e-mails. But it's worth the 30 seconds it takes to send them. And if they are irritated by my e-mail, I figure it is having the intended effect.
  10. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I'm just afraid they may be blocking repeated emails by the same email address as spam. :(

    I would suggest taking advantage of Faxorama.


    LOL Ahimsa- you're right, it's not what have you done for me lately, it is what have you done for me EVER. Except create the most insulting name for a disease imaginable! You feel like death and you have to say you have "Chronic Fatigue Syndrome"..... it's like salt in a wound!
  11. RivkaRivka

    RivkaRivka Senior Member

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  12. Kelly

    Kelly

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    Stop with the childish " you're mean because I don't want to hear your point of view"

    Okay. Lone voice of dissent yet again. Patients are very invested in a very specific viewpoint and tend to filter everything that is said through their anger. It is a human thing. :D It's not a bad thing unless it is not working for you.

    The resulting distortions are the reason most researchers avoid patients as much as possible.

    You want to be heard? Inform yourself. Stop blathering about conspiracies because no one is listening to "grassy knoll" theories. (I'm not saying there hasn't been an active campaign to squelch biomedical research among a small group of scientists, but no one wants to hear it.) Repetition of half truths isn't making people believe you. So stop trying to convince the world that patients really are crazy.

    Most scientists, including Dr. Le Grice and Dr. Houghton, are merely expressing their point of view which because they are scientists is most likely much more informed than most patients.

    Learn how science works. Learn that negative answers are just as informative as positive ones. They tell us that patient selections counts, that not all viruses are found in the blood, that disease stage matters etc. Even if XMRV flops the world and most specifically the world of researchers (other than the CDC) are hearing this. It applies to all ME/CFS research.

    Don't pin all your hopes on XMRV, it may or may not be pathogenic even when present - that isn't a conspiracy that's science - which if patients were not so invested they would be able to understand. You can hope, but this is not do or die. More and more researchers are now interested and are tackling the problems patients and ME/CFS experts have known for years.

    There are hundreds of thousands of viruses in the world and more yet to be discovered. This is a new field. Only a handful of those hundreds of thousands are pathogenic to humans. Some are only pathogenic in combination with toxins or other microbes.

    If you want people to hear you listen to them. Dennis Manna from the NIH told you the truth - time taken to sort and answer repetitive uninformative emails takes away from more important work. Send one thoughtful and well informed message. Use accurate information not half baked theories.

    Think about it as a parent if you are one. How do you feel about it when your kid pesters you half to death because they didn't like the first answer? Parents with no backbone give in, but good parents tell their child to stop bugging them or the answer is no and will stay no. It's a thought.

    If you are furious about hearing a view point that you don't like, take a deep breath, and open your ears. Think it through. You may not change your mind and that is your right, but you may also lose some of the anger and learn something new or find a new way of thinking about this horrible mess.

    This isn't everyone so if it's not you don't make it about you.
  13. muffin

    muffin Senior Member

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    USA!
    More possible suggestions:

    1) Email/Phone/FAX: Margaret A. Hamburg, M.D. (Commissioner of Food and Drugs) margaret.hamburg@fda.hhs.govFDA --- We need Ampligen! Ampligen is only provided in two places in the US at a cost of $24,000.00 per year. Medicare does not pay for it. Most insurance companies do not pay for it. We all must have access to this medication with Medicare and insurance companies paying for this medication. FDA needs to get us this drug NOW and ensure that Medicare/Insurance companies pay. Ask Hamburg WHY we can not have this medication since it has been proven to help ME/CFS sick people. http://www.drlapp.net/ampligen.htm

    Alert the media that Ampligen is out there but costs $24K/year out of pocket and patients should have acess to this medication with Medicare/health insurance companies paying for it. There are medications that are helpful to ME/CFS patients but the Federal government will not allow their use or make changes (FDA) that would ensure that these meds are paid for by Medicare and health insurance companies. Alert that there are also anti-virals available and have been tested that also help some ME/CFS sick and since clinical trials have not been funded, we do not have access to these medications. We need clinical trials and we need access to those anti-virals NOW - fast-tracked.


    2) Use the CFSAC personal testimonies (cut and past them into the email with link) and send them to HHS, NIH, FDA, CDC, and the media (local, CNN, MSNBC, even Jesse Ventura. (Conspiracy - he looks for wide government conspiracy and this would fit. Ensure you use the Gulf War Vets since he was a Navy Seal) Send the testimonies and all other info you send to the government to the MEDIA and make sure that media addresses are in the same SEND line as the government ones. We want the government types to SEE that we are sending it out to the media[/B]. Puts pressure on them when they see that we are involving the media. Don’t BCC the media, put them right in the TO line with the govt addresses. http://www.hhs.gov/advcomcfs/meetings/presentations/
    Those presentations were powerful. IF the government morons read them they should be moved. I was.

    3) Tell the HHS that the CDC must be removed from ALL CFS research - 30 years of damage we do not trust them and we do NOT want them involved. Hit the White House.gov site and tell what you have told the Fed health orgs. Never hurts to alert the Presiden/VP, etc. to an epidemic, retrovirus, etc. and what the Federal government orgs are NOT doing about it.

    4) DON'T KNOW ABOUT THIS ONE YET (Dangerous Territory About Blood Issues - May be Viewed as a "Threat": Ask if the Federal types would like a pint of your XMRV postive blood (IF you are a universal donor) Note that they could see for themselves IF they get sick and IF anti-virals give them back their life - however, they should move out of their homes away from spouses and children because it is contagious and the numbers for spouse contagious/mother-child contagious is statistically high enough to warrant this move.
  14. muffin

    muffin Senior Member

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    USA!
    Fight. We need money for all sort of research and not just the Retrovirus research. Fight. Beat on all the senior people in the Federal government health organizations. Make them listen. Make them get us money for research - all sorts of research and clinical trials. Thirty years of nothing is far too long. HAD the CDC not damaged Retrovirus research in the 1980's, had the NIH not killed off research for further retrovirus research in the early 1990's who knows what that third human retrovirus would have provided us ALL information wise? Maybe not a cause for ME/CFS but maybe other diseases and cancers.

    We need money for research and clinical trials now. POUND on the government. Bang on the media. And if a researcher changes their mind after they publish something, ask them why? Why did you do an about face? Who got to you?

    Again - NO more Inside Voices! Fight. Fight. Fight.
  15. xrayspex

    xrayspex Senior Member

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    Muffin rocks

    if you are weak rent film "and the band played on" and read "osler's web" to educate yourself
  16. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Joe I love those cartoons. Humorous, but also a serious message with them. I think if you can make them chuckle (at NIH) you may break the ice! :D
  17. Kelly

    Kelly

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    Object to CDC hiring an insider to replace Reeves

  18. muffin

    muffin Senior Member

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    I have thought long and hard about stating that the CDC needs to be out of the CFS game. By rights, it is their job to deal with an epidemic like ME/CFS. But three decades has shown us all that they will not deal with it correctly and so I finally decided that maybe they should just be out of the CFS game.

    I have emailed Frieden and told him that he needed to find someone outside the CDC without the bias against CFS. I also noted that he should ensure that this person is someone that the CFS community will find acceptable because the CDC has done major damage to us for 30 years, and in this case we should be consulted. In this case. But I really have no faith that whoever they put into the new CDC/CFS slot will do any part of the job correctly. And so I concluded that we sick need to get ME/CFS out of the CDC in our own best interests. It should not work like that - I know that - but when an organization has shown for such a long time that there is ingrained bias throughtout the entire organization (ask any CDC person about CFS, see the reaction), then it is just not going to work no matter who you put into that slot.

    I really do know that the CDC should be doing their job with this epidemic. But come on, you don't call people up on the telephone and ask them if they are tired. That's not how it is done.

    Thanks Kelly for the addition of hitting the manufacturer. Have to see what all their role has been in this. I know they did try like crazy to move it all past the FDA for years since they too saw big money in this new medication, but why such a steep cost? Recouuping their investment back by the tiny number of people who can afford the medication? Must be far more to this than I have read. Mary S. would have better insight into the drug and its issues, etc.
  19. mezombie

    mezombie Senior Member

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    On behalf of the organizers of the "Time for Action" campaign, I briefly want to say that we will be reporting back on the CFSAC meeting and our impresssions of Dr. Mangan as soon as possible. Please bear with us; we are still recovering from the CFSAC meeting.

    We have a lot of good news to share and will explain why we feel that it's time to stop emailing NIH with our previous message.

    --Charlotte v. S.
  20. VillageLife

    VillageLife Senior Member

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    weldone Cort!

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